Saturday, January 9, 2016

Happy New Year!!!!

Welcome to 2016 everyone. Since this is my fourth Happy New Year post in the history of this blog I put four exclamation points in the title.

This post will be a recap of 2015, followed by some musings about where things go from here. But first I have some interesting blog news that could potentially go unnoticed. I have purchased a domain for the blog, which will make it much easier to tell people the address (the URL). Instead of fibrinogenamyloidosis dot blogspot dot com, the blog's new address is . . . (drumroll, please): fibrinogenamyloidosis dot com. (Original, isn't it?) It is still a mouthful and hard to spell for those outside of the amyloidosis community, but at least now the "blogspot" part is no longer necessary. If you have it bookmarked there is no need to change that, because any URL with the "blogspot" part will be redirected to the new URL. (If you are reading this post on the web, you will not see "blogspot" in the address bar of your browser any more.) So it is really just a behind the scenes change that will not affect any current visitors, and it makes it easier to communicate the address to others. Moving on . . .

Here is what happened with the blog in 2015:

17 new blog posts were written, which is an average of one every three weeks.

4 articles were reviewed. (Down from 21 in 2014)

7 additional countries visited the blog, bringing the total to 108.

The blog received 17 spam comments, none of which were particularly entertaining.

In personal news, the major event of course was Mom's sudden passing in October. Up to that point, though, here are the highlights:

January: New CPAP machine

March: Balloon angioplasty to open up two tight spots in the fistula

March: Kidney transplant on hold due to GI bleed and pulmonary nodules

April: Significant back pain started, eventually determined to be due to an infection. No real pain relief until June.

August: Low blood pressure issues began

September: Balloon angioplasty to open up three tight spots in the fistula

October: Died due to ruptured fistula

Although Mom had no major health issues in 2015, and surprisingly no hospitalizations or emergency room visits, her health was declining gradually. I was getting concerned about the low blood pressure, which the doctors were still trying to control by adjusting medications. She also seemed to be having less and less energy, which may have been a direct result of the low blood pressure. And then there was the issue with the infection in her spine, which caused two to three months of chronic pain. That kind of pain for that length of time will surely drain a person of energy as well.Regarding the future of the blog, I do intend to continue posting at least monthly, covering any support group meetings I attend and reviewing the few remaining articles I have. Since I have the mutation there will also be at least one post per year to report on the findings of my annual physical. I also plan on doing a series of posts about genetic testing now that I have a little better understanding of the issues people face, and also to discuss some of the important differences between fibrinogen amyloidosis and the ATTR types that should be considered when making that decision.I would like to thank those of you I have been in contact with who were recently diagnosed with fibrinogen amyloidosis. Having such a rare disease can be somewhat lonely, so it is good to have other people in a similar situation to communicate with. Hopefully the blog and our emails have been beneficial.=====Monthly Blog Status Update=====